Who's on Imbruvica ? What's side effects ? - CLL Support

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Who's on Imbruvica ? What's side effects ?

Chinhdo profile image
8 Replies

I'm Chinh 70 , found Cll in 2019 Sep., On Imbruvica from Nov., Nothing happened in 28days, 29+ 30th - fever 40.2 C mainly by nights , dayly - easier- 38C...

Please , anyone similar?

Tks

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Chinhdo profile image
Chinhdo
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8 Replies
Shepherd777 profile image
Shepherd777

Wow!! Are they sure you have CLL? Putting one on Imbruvica in a few short weeks seems unusual to me. It does not seem like there was enough time to get a FISH test, blood smear evaluations, genetic testing, etc.

If you have CLL they usually want blood tests done over several months to see the rate the white blood count is increasing, absolute lymphocyte numbers, etc., body scan to evaluate lymph node sizes, spleen size, number of night sweats, and more.

If you have obvious enlarged lymph nodes in your neck or groin area due to CLL you often notice a decrease in size in a week or two on Imbruvica.

JigFettler profile image
JigFettlerVolunteer in reply to Shepherd777

Good point, made well.

Jig

81ue profile image
81ue

Imbruvia is a slow and steady drug, there are no fast results. Also if you have a high tumor burden, you want slow results because a fast kill of cancer cells might endanger your life in what is called tumor lysis syndrome. You still need to give it time. After several more months you should see changes.

Tell your doctor now about the fevers, and how many days it has been. They may want to try to have you control it with Tylenol, and if it does not resolve, then there may be a more serious issue that needs medical treatment (uncontrollabe fevers could signal a life -threatening infection).

JigFettler profile image
JigFettlerVolunteer

Hey!

As already stated above, your CLL journey would seem very unusual.

What are your blood count results, your lymphocyte level, haemoglobin, platelets. Have you had a FISH test, flow cytometry? CT scans ... do you have swollen lymphnodes, enlarged spleen?

And, with fevers over 38° you should be getting hospital treatment urgently.

Jig

AdrianUK profile image
AdrianUK

Move directly to hospital. Tell them you have a blood cancer and are on cytotoxic treatment (or say “a specific form of

Chemo”) and due to the temperature you need them to rule out neutropenic sepsis.

You may just have a cold.

But if you have low neutrophils due to the new drug this fever could be very serious if not treated.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Wow! That's a fever of over 104 F. You need immediate medical attention, both to deal with the fever, and to determine whether the diagnosis is correct! See Jig's questions above. You need answers to those immediately!

Newdawn profile image
NewdawnAdministrator

Chinhdo, forgive me for asking this but I see from your profile that you’re from Asia and you enquired how to purchase Ibrutinib at a reasonable price. I’m concerned you may have sourced it with less than reasonable medical oversight.

However you are receiving Ibrutinib, it should be with close medical monitoring. I’m on Ibrutinib and high fevers are not a normal side effect so seek medical advice.

Please let us know how you go.

Newdawn

Shepherd777 profile image
Shepherd777

I am from the States and did no note the centigrade temp as we use farenheit here. You need to see talk to a doctor about this sooner and not later.

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